DisneyWorld with a Profoundly Developmentally Disabled Adult?

[lil.disney.princess]

Hi troy havent seen you post for a few days hope all is ok and only 12 more days to go!!!!!

 

[Troy3357]

Hi Folks,

This has had to have been one of the most frustrating weeks I have had in a long time. It seems that my work is going to REQUIRE me to attend meetings in orlando with our biggest customer while Billy and I are there. This has had a big impact on this trip obviously.

What this means is, I have changed the hotel from the Contemporary at 280 bucks a night to the pop century at 77 bucks a night X 2 rooms with a connecting door so I can get work done late when Billy is sleeping. The hotel change was necessary because I will need to get 2 Aides instead of one beecause I cannot leave Billy with one person all day, it's just too much. Add the Nurse to run the meds once a day and the cost of just the staff is just over $2000 for the 6 days. I figured it was better to change hotels and have more hands.

I will have breakfast with him most days and will spend the entire first day we are in orlando with him. I hate my job sometimes! But without it none of this would have been possible. I just want to be sure he has a good time. I will be with him and one of the Aides at the christmas party on the 15th. I will walk out of a meeting if necessary to be there for that.

I have packed everything I can think of that I have on hand into the boxes to ship down. Every day I think of something else that I need to go get so Walmart and target and Toys are Us are really getting to know me

It seems they cannot locate his foot pedals for his wheelchair so we are renting one for the trip. The one good thing about this is it will recline and his won't. Also the one he has has the bigger wheels in the back and the one we are renting is a companion chair that has small wheels so he cannot get his hand stuck or push him self and I feel better about that in a strange place. I am not worried about him pushing himself away from me because his coordination is not good enough to do that. I worry about him moving the chair at the most inopportune time (like on a ride).

The Steroids have helped with his overall situation. He is more tired now than he was before he went into the hospital, and a bit more clingy. We will probably be making regular use of the aid station at this point because the hotel would be a hike now.

I feel like I am letting him down. My boss left no room for discussion on this. These meetings could last 6 hours each day. I may extend to the 19th just to get the time with him in the parks.

Sorry I have not been posting in a while, it's just been a handful trying to get everything ready and keep up with work and argue with my boss.

Thanks for listening to me go on about this.

Troy

 

[SueM in MN]

Well, hope you have fun anyway.
Good luck on your trip.

 

[lil.disney.princess]

@your boss for doing this to you-but im sure that billy will still have a fab time m8 xxxxxxxxxx love to you both xxxxxx

 

[D L and K's Mom]

I was just checking in to see if there were any new posts. I hope the lack of posts is because things are going according to schedule and you are packing and getting things all ready for your trip!! How is everything? How is Billy? Post to let us know........

 

[SaratogaShan]

I think they are at WDW now. If I remember correctly they left on the 4th. I too have been thinking about Troy and Billy. I said a little prayer that all is going well despite the last minute work obligations. Pixie dust for a magical trip!


ETA: The trip dates are the 4th - 11th!

 

[SueM in MN]

ETA: The trip dates are the 4th - 11th!

Yes. That was the time period I thought too.

 

[Troy3357]

Hi folks,

Our trip will be from the 12th to the 19th.

Billy is doing better. He is much more like himself but I am pretty certain this will be his only trip to Disney. He is alot more tired than before the last trip to the hospital.

I have decided that we will get hospice involved and stop poking and prodding this little boy. This was the hardest decision I have ever had to make. I believe it is the right one though. The doctors think that his condition will only deteriorate. There are no more treatments that can be done that would do any lasting good and the little time they would give would be in the hospital. I refuse to put him through anymore.

We will go to Disney and I will see to it that he will have a good time. We may spend half the time in the Aid station but he will meet pooh bear and have breakfast every day at the crystal palace with pooh bear. I have made the reservations for this. We will be at the christmas party on the 16th. If he enjoys this I may get tickets for the 18th as well. I just want to see his smile when he sees pooh bear. The boxes of supplies will go out tomorrow.

Thank you all for your kind help and advice.

Troy

 

[SueM in MN]

Sometimes what is best is not the thing that is easy.

Good luck on your trip.

 

[Twende]

Troy, I will be in the world some of the same time as you.

My family is joining me on the 15 th and we are staying until the 20th. We will be in the Magic Kingdom the same night as you!

If I see you I will be sure to stop and say hello!

 

[Troy3357]

Hi Folks,

I have packed everything I can pack, have shipped 3 boxes, have lists out the ying yang and hope I have not forgotten anything.

Of the three boxes 2 will not be coming back (one is a case of diapers and the other is his ensure and tang that can be mixed in bottled water on the fly). Can anyone tell me how I ship the one box back? Also has anyone ever been able to check in before 3pm? I was planning on getting to Disney at around 10 or 11am.

Thank you,

Troy

 

[Cheshire Figment]

A lot depends on if the room they have you blocked into was used the previous night, or if not, the people checked out early and housekeeping is done. Or, if you can take any available room.

As far as shipping, the hotels with convention centers all have business centers which will handle the shipping. Otherwise it may be possible to leave it at the desk and get a price quote from UPS and leave a check payable to UPS. Of course if you have your own UPS or FedEx account it can be shipped and billed to you as the recipient.

 

[dclfun]

Troy- we'll be there too during that time. If you see a lady with a labrador service dog wearing gold Mickey ears who is in a big red wheelchair with a ventilator and feeding pump on the back, it's me...so please say hello if you get a chance since I'd like to meet you and your brother. As Mommy to MJM mentioned I'll be singing in the Candlelight processional on both the 15th and 16th ( barring inclement weather) at the late shows. I'll be working at a Diversity Summit over at the Contemporary as a volunteer on the 16th all day but otherwise we'll be in the parks enjoying the Christmas atmosphere. Have a magical trip and take lots of photos when Troy meets Pooh bear! ---Kathy

 

[lil.disney.princess]

Not long to go now!!!

hope you have a safe journey and a fabulous trip!!! take care

 

[D L and K's Mom]

have a great time. We also ship diapers etc down. When we ship it back we bring it down to the front desk and they ahve always shipped it for us. Last time we were at POR we waited so long in line they shipped it for us FREE!!! When you get to your hotel as about a room. On many occasions we have been able to go to a room and change DS and get him situated until our room was ready. They will probably put you in a small room not handicapped access until yours is ready. They also have let us have access to a room after we check out so we can do afinal diaper change or bathingsuit change after checking out. Have a wonderful time!!! Please let us know how things go!! Take many many photos. Let the Disney photographers take some photos. They are a bit expensive but they are worth it!!! The photopass people are wonderful!!! Have a great time!!!!

 

[D L and K's Mom]

Troy just wondering if you and Billy are back from your trip? How was is? Please post........

 

[Troy3357]

Hi All

It's late so I have just a minute to post a quick note. I will post alot more tomorrow, I promise.

The trip was an incredible success! Billy had such a wonderful time! I had to keep tissues with me as seeing him smile and clap his hands brought tears to my eyes more than once.

His favorite thing was breakfast at the crystal palace. I had made reservations for every morning we were there. When we got to the area that you check in with your reservation, Pooh bear was on that side of the restaraunt and he saw Pooh trhough the window and got soooo excited I didn't think we would be able to get any food in him! The CM's there were so wonderful! One of them gave Billy her hat which is a christmas hat with pooh bear ears on it. The manager on duty said they don't even make that hat any more. He said that she had been wearing that hat ever since she started working there 15 years ago. From that point on every time Billy saw pooh bear he would reach up and bat the left ear on the hat and say "ear!" and smile! It was truly a wonderful thing she did. Her name is Susan.

Well I could go on for quite a while, but must get some sleep. I will post a full account tomorrow.

Thank all of you for helping make this a truly wonderful experience for that little boy. And a big thank you to MommytoMJM and Talkinghands for taking the time to come over and say hi to us and for saving a wonderful spot for us for the parade! Billy loved the parade (especially when pooh bear showed up!).

Troy

 

[SueM in MN]

Glad to hear your trip was a success.

 

[lecach]

I just came over to the disABILITIES board to see if you had posted yet. I am glad the trip was a great success. I look forward to reading your report.

 

[Sue & Co.]

Glad to hear it went well - look forward to hearing more details in due course.

Sue